Jonah had a renal ultrasound today.
His last ultrasound in June was not good. The doctor indicated if today's ultrasound was the same or worse, Jonah would most likely need surgery. So a lot was riding on today's results.
They were great! Jonah's right kidney is almost back to normal size (10 cm instead of the normal 9), and his left kidney went from 15.6 cm in June to 14.1 cm today. The doctor was very pleased with that reduction. Jonah is still considered to have severe hydronephrosis, but the doctor is very hopeful that Jonah's left kidney will continue to reduce in size. We return in 6 months for another renal ultrasound.
Since his June ultrasound, the doctor instructed us to have Jonah double void every 2 hours. For the most part we have followed this new routine, but we have also noticed that Jonah seems to be emptying better over the past few weeks. His knee injury caused a bit of a setback because of him just being overall stubborn and frustrated with life, but as of late, he has been voiding more efficiently.
When the doctor heard this update on Jonah's voiding as well as saw the results of the ultrasound today, he feels like he can finally say what really caused the hydronephrosis that started back in August 2020:
1. Jonah started to hold his urine back in summer 2020 because of new expectations being placed on him to stay dry. Instead of holding until he used the bathroom, he basically just started holding all the time. Of course he voided enough for us to not be concerned. This is probably because another issue was happening behind the scenes. Jonah's bladder is very stretchy so it can hold more than a typical child. So Jonah was voiding for us, but he was also holding a lot more urine that we could have ever imagined.
This holding of urine caused a backup into the kidneys. The right kidney was enlarged, but the left kidney was more severely affected because of Jonah's 2012 ureter to bladder reconstruction surgery (due to a congenital defect). The doctor thinks the backup of urine caused scar tissue from original surgery to seal together, making the ureter almost completely blocked which further complicated the issue. All this was happening "behind the scenes" or unknown to us.
3. Since then, Jonah has had to recover from the initial and subsequent kidney infections. He has also had to deal with the discomfort of a stent and suprapubic cathether. Both of these things were ironically placed to help his kidney drain and get back to normal size. However, Jonah is very sensitive to how these things feel and so even though they were necessary, they also slowed down Jonah voiding efficiently- if that makes sense.
4. February 2021 the stent was removed. May 2021 the catheter was finally removed because the doctor was pleased with how the left kidney was starting to get smaller.
5. From May 2021 to present, we have been having Jonah use the bathroom every 2 hours and really working on him to empty each time as best he can. The regular ultrasounds over this time were showing continued improvement until June 2022.
6. All of sudden in June 2022, Jonah's right kidney was enlarged slightly after staying the same size since Fall 2020, and Jonah's left kidney was up to 15.6 after having a downward trend that had it at going from its highest of 17.3 in August 2020 to 13.9 in December 2021. The doctor decided to try double voiding all the time in hopes that this would bring the left kidney down in size and also avoid Jonah needing surgery to place another stent and possibly a catheter.
7. Which brought us to today's result of back down to 14.1! The doctor was very pleased. This shows him that Jonah's hydronephrosis is driven by his voiding issues. From the beginning, it was him holding his urine which caused things to get blocked and backed up. It's a behavior that is causing structure issues. Not structure issues that are causing him the behavior of holding his urine.
This is good news. We want to know that Jonah's kidney/bladder is working the way it should be. We don't want to have surgery in order to reconstruct what was already reconstructed back in 2012.
The concerning news though for me as a mom is knowing that now the pressure is really on to make sure Jonah is voiding efficiently. Because if he doesn't, he is putting his kidney health at risk.
The other concern for me is that I did not notice any issues with Jonah's voiding in the weeks before his June 2022 ultrasound which was not good. So I'm scared that Jonah might be presenting to me like things are going good in the bathroom, but that he might still be holding back and not emptying completely.
So yes, very good news, very relieving news that Jonah doesn't need surgery. But also a very stark and serious reminder that bathrooming every 2 hours and very carefully monitoring what happens every 2 hours is very essential to keeping Jonah's kidneys healthy.
The doctor is hoping that as Jonah matures in his behavior, he is learning what it feel likes to concentrate and empty his bladder completely. That as time goes on, there will be a time when we will not have to micro-manage this part of his life.
But for now, we must continue encouraging and carefully watching this issue. Regular check-ups with the urologist will continue indefinitely. Use of pull ups will also continue indefinitely because we don't want to do anything that will "rock the boat" as the doctor put it. Jonah will also continue on his daily antibiotic to help prevent bladder/kidney infections.
In summary though, we are very proud of Jonah. We have been pushing him hard these past 3 months to void efficiently, and he has answered the call, even with the setback of his knee injury. This boy is a trooper! Not much knocks him down for too long!
Left kidney stats: Remember normal kidney size is 9 cm
August 2020 17.3 cm x 7.9
September 2020 15.5 cm x 6.9
October 2020 15.8 x 7.7
April 2021 14.3 cm x 4.9 cm
September 2021 13.6 cm x 5.9
December 2021 13.9 cm x 6.9
June 2022 15.6 cm x 6.2
August 2022 14.1 cm x 4.6
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